Still In the Hospital

We got up to a room around 1:15 or so this morning.  It wasn't until about 3:30 that the activity in and out of the room died down enough to get some rest.  I woke up somewhere between 6:30 and 7:00.  Can't say those few hours were very restful, but I am grateful for a little bit of sleep.

Peyton's feeds were resumed sometime during the night, which is good because they'd been stopped around 6:30pm yesterday.  She is receiving the IV antibiotics through the regular old fashioned IV line that, thankfully, is STILL working.  She has a horrible history with having IV's placed and staying good!

She was to have a port study done today in interventional radiology.  It was done around 1:00pm or so today.  We were taken to the heart and vascular center - not just peds radiology where I had assumed we'd be going.  We've been to this place once before when she had a bronchoscopy a while back.  It is like the arctic down there!!  The "suites" are like an OR but they have all the radiology equipment in them.  I suppose they do some procedures down there that require it to be more of an OR type setting.  I snagged a pic of the room on my cell phone after the study was over.  I actually wasn't allowed to stay, so  was escorted to the waiting area and waited a brief time.  Long enough to flip through a May 2012 issue of People magazine and discover just how haggard some of the big time movie stars have gotten to look lately.  And Robin Gibb was still alive, per this issue (he actually did pass away 5/20/12, obviously after the issue ran).

Anyway...

They came and got me when it was over.  Basically, they access the port with a needle (like what we'd use normally for accessing the port) and ran a dye through it.  First of all, they use "live" xray to guide them so they are 100% sure of where the needle is going - making sure everything is properly positioned.  Then they run the dye to see where it goes.  Everything went well and they were able to leave her accessed with the needle.  Now, she still has a lot of puffiness from the whole issue of the meds not going into the port, but rather under her skin.  That will eventually clear up as the body absorbs everything.  When we got back up to her room, the nurse started up her IV (regular IV, not the port), but her next dose of the antibiotics will be run through the port.

Peyton's surgeon just came to see us.  He checked her out and felt around the port to feel how it felt.  Does that make sense??  To see how well-in-place it was, I guess.  He explained to me that the port itself....

wait...let me back up.

Go here: http://en.wikipedia.org/wiki/Port_(medical)

Look at the top picture on the right.  The round metal thing is the "port".  THAT is what is permanently placed in Peyton's chest.  It is connected to a catheter that runs through one of the veins or arteries (not sure which) that goes to the heart.  Now the piece that you see poking down towards the round port is the needle.  Imagine fatty tissue/skin between the port and the top of the needle.  With a port, as you see, the needle is inserted straight down at a 90 degree angle to the plastic top of the needle, whereas a regular old IV line is just one straight piece.  See the difference??  The needle goes into a thick rubbery type stopper piece.  Once the needle's in place, it's firm.  It shouldn't fall out.  It's in place.  It would take a pretty good movement or bump to knock it out.  OH, and the back side of the port is metal.  The needle cannot go through it on the back end

Ok, got it??  Port lesson complete.  If you have any questions, I can try to answer!!

Ok, so the surgeon was explaining to me that the port itself is sutured in place with non-absorbable sutures - it's sutured to the muscle.  But sometimes it can come loose or be brought up somehow.  He also said that in children (she would have been 3 when she got the port) he had been using a smaller low-profile port.  He's going to look up her records to see if that's what was used, but by feeling around, he thought it probably was.  With growth (she's now 6), it may be that the smaller low-profile option isn't the best option for her now.  He said that about half the time when they bring people in to interventional radiology with this problem, it winds up as our situation did.  The other half, there is something wrong that requires surgical intervention.   He basically gave no guarantee that this wouldn't happen again (and I totally get that!) but he thought for now we'll leave things the way they are but she will probably have to be "upsized" to the non-low profile port.

So, for now, we are still at the hospital. I am sure they want to get her meds running through the port and make sure that everything is running smoothly with no additional problems.  Otherwise, she's had some REALLY thick secretions today causing her to gag and throw up a couple times.  The respiratory therapist was concerned about the secretions because the suction machine actually couldn't keep up with it!

It's after 4:30 now.  Nothing has been mentioned about leaving, so I'm confident we're in for another night.  Besides, the respiratory therapist was asking the schedule for her to go on bi-pap and they brought in a pulse ox monitor.

Ok...scratch that...the nurse just game in.  The doctor wrote discharge orders, so we'll be going home tonight!